RealTalk MS
Last week in Phoenix, Arizona, the Consortium of Multiple Sclerosis Centers (CMSC) held its annual meeting, and we had a chance to talk with some of the top MS experts in the world. Welcome to Part One of our coverage! First, you'll hear Dr. Kathy Zackowski, the National MS Society's Associate Vice-President of Research, share her overview of the sessions and presentations that especially stood out to her. Then, you'll hear Dr. Stephen Krieger as he expands on one of the most interesting and provocative presentations at the conference. Dr. Krieger headed up a panel of experts...
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Every five minutes, someone somewhere in the world is diagnosed with MS. But getting that diagnosis can be challenging. And the evidence is clear that early intervention makes a difference. The sooner someone can begin a disease-modifying therapy, the better their outcome is going to be. World MS Day is May 30th, and this year, World MS Day is focused on eliminating the obstacles that get in the way of a timely and accurate diagnosis. I thought World MS Day would be the perfect time to invite Meredith O'Brien to join me to discuss her new book, Uncomfortably Numb 2: An...
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Last week, the National Multiple Sclerosis Society and the European Committee for Treatment and Research in Multiple Sclerosis convened a meeting in Dublin, Ireland, to dive deeper into what a new framework for describing MS might look like. There's still a tremendous amount of work to be done here. But, considering that whatever language is eventually adopted will affect every person living with MS, I want to keep you fully informed on this important work. So I'm devoting this entire episode of the podcast to sharing conversations I had with three of the attendees at the meeting in...
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If you're living with MS, you might experience days when it feels like you're losing your sense of who you are, as your sense of self gets redefined by your symptoms. Reasserting your personal style can be a powerful way to rediscover joy in who you are while reclaiming your identity. Jeri Zink Denz lives with MS and works in the luxury fashion industry. She's always been passionate about fashion and personal style, and Jeri joins me to discuss how you can find and define your personal style, despite the challenges that MS may present. We'll also explain the hidden outcome of...
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Most people living with MS don't see their neurologist often. For many, it might be only once or twice a year. A lot of important things take place during that appointment. Symptoms are assessed. Decisions about disease-modifying therapies are made or, sometimes, changed. Questions get asked and, hopefully, answered. Dr. Barbara Giesser returns to the podcast, this time, to review the things that should be discussed and followed up on at your appointment with your neurologist or MS specialist. We're also sharing some good news about MS research funding from the National MS Society and...
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Welcome to the 400th episode of RealTalk MS! Over the past nearly eight years, it's been my absolute honor to bring you insights from leading experts, researchers, advocates, and, perhaps most importantly, from people living with MS themselves. And we have no intention of stopping here! We're excited to continue bringing you the information and conversations that matter most to the MS community. In this episode of the podcast, Dr. Tim Coetzee, President and CEO of the National MS Society, looks back at a significant milestone that took place eighty years ago. Tim also shares his...
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Research shows that spirituality can benefit mental health and improve overall well-being. And it can play a meaningful role in helping people cope with life’s challenges, like living with MS. This week, Dr. Mana Ali Carter, a rehabilitation psychologist at MedStar National Rehabilitation Hospital in Washington D.C., joins me to discuss the positive effects that spirituality can have on the mind and body, and how it's been shown to make a difference for people living with MS. We're also sharing encouraging initial reports from a Phase 1 clinical trial for KYV-101, Kyverna's...
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Last week, at the American Academy of Neurology annual meeting, Dr. Amit Bar-Or received the John Dystel Prize for Multiple Sclerosis Research for his multiple achievements that have advanced our knowledge of neuroimmunology, precision medicine, and biomarkers in MS. We talked with Dr. Bar-Or about how some of the latest discoveries in MS research would impact patient care. Tolebrutinib, an investigational disease-modifying therapy, is currently making its way through the FDA's regulatory process. Last week, the results of the Phase 3 clinical trials for Tolebrutinib were published, and...
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For many people, it can be difficult to talk about the feelings of loss that can accompany MS. For some, it's the loss of the way they imagined their life would turn out. For others, it's the more specific loss of function. Perhaps the loss of their mobility. Or a decline in their cognitive skills. It's painful to imagine any of these scenarios, let alone experience them in real life. The human response to loss is grief. And grieving itself can affect your physical, emotional, and cognitive health. Joining me today to discuss how grieving can affect you, along with ways to best...
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Managing MS means staying focused not only on your MS but also on your overall health. That includes getting routine health screenings to stay ahead of potential complications. Recent research has shown that, compared to healthy people, people with MS are more likely to develop some cancers. Clinician-scientist Dr. Ruth Ann Marrie joins me to discuss which cancers pose a greater risk to someone with MS, why you need to make those appointments for cancer screenings, where you can find low-cost or no-cost cancer screenings, and things you can do to further minimize your risk of...
info_outlineAshli, who lives with MS and has completed the TEAAMS program, and Victoria, a behavioral coach who has worked with several study participants, join me this week to share their experiences in the study.
We're also talking about a new Phase1/2 clinical trial for another investigative CAR-T therapy. (And we'll explain what a Phase 1/2 trial is)
We'll tell you about TG Therapeutics' plans for Briumvi, as well as their investigative CAR-T therapy.
We'll tell you about the Phase 2 clinical trial for Contineum Therapeutics' oral remyelination therapy.
We'll share the details of a study that shows ballroom dancing delivers both physical and psychological benefits to people with MS.
We'll share some potentially good news about managing MS-related fatigue.
And we'll give you a new opportunity to participate in MS research.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Inside the TEAAMS study :22
Cabaletta Bio announces Phase 1/2 trial for CAR-T therapy 1:45
TG Therapeutics will develop an injectable formulation for Briumvi 5:45
Contineum Therapeutics completes recruitment for Phase 2 trial for an oral remyelination therapy 7:52
Study shows that ballroom dancing delivers physical and psychological benefits for people with MS 9:05
Study shows that Elevida, an online German fatigue intervention, significantly reduces MS-related fatigue 11:32
Ashli and Victoria share their experience in the TEAAMS study 15:37
Share this episode 32:57
Have you downloaded the free RealTalk MS app? 33:17
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube
https://www.youtube.com/@RealTalkMS
STUDY: Ballroom Dancing for People with Multiple Sclerosis: Perceptions of the Experience
https://meridian.allenpress.com/ijmsc/article/26/Q4/355/504470/Ballroom-Dancing-for-People-With-Multiple
PARTICIPATE IN MS RESEARCH: Targeted Exercise for African-Americans with Multiple Sclerosis (TEAAMS)
https://projectteaams.ahs.uic.edu/
PARTICIPATE IN MS RESEARCH: Confirmatory Trial for Alleviating Fatigue in MS (CAFE-MS)
https://cafems.iconquerms.org/
Join the RealTalk MS Facebook Group
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https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 387
Guests: Ashli and Victoria